Co-design and Development of ENDOTEXT, a Supportive Text Message Intervention for Individuals Living with Endometriosis: Mixed Methods Study (Preprint)

Abstract

Background: Endometriosis, affecting 1 in 10 people assigned female at birth, is a chronic systemic inflammatory disease, with high symptom burden and adverse socio-emotional impacts. There is a need for an accessible, cost-effective and low burden intervention to support individuals in managing their endometriosis condition.

To co-design and evaluate the acceptability, readability and quality of a bank of supportive text messages (EndoText) for individuals with endometriosis.

In Phase 1 of this mixed method design, 17 consumer representatives (individuals with endometriosis) participated across three x 3-hour online (Zoom) focus groups. Transcripts were encoded and analysed thematically. In Phase 2, consumer representatives (n = 14) and healthcare professionals (n=9) were then invited to provide feedback on the acceptability, readability and appropriateness of the developed text messages in an online survey. All participants completed a background survey assessing sociodemographic and medical factors prior to participation.

Consumer representatives demonstrated diverse sociodemographic characteristics (Mage = 33.29), varying in location (metropolitan vs. rural/regional), employment, relationship and education status. Participants agreed on a frequency of four text messages per week, delivered randomly throughout the week and in one direction (i.e., no reply), with customisation for the time of day and use of personal names. There were seven main areas with which individuals required assistance and became the main topic areas for the developed text messages: general endometriosis information; physical health; emotional health; social support; looking after and caring for your body, patient empowerment and interpersonal issues. Via an online survey, 371 co-designed text messages were highly rated by consumers and healthcare professionals as clear, useful and appropriate for individuals with endometriosis. Further, readability indices (Flesch-Kincaid scale) indicated the text messages were accessible to individuals with a minimum of 7th grade high education.

Based on the needs and preferences of a diverse consumer representative group, we co-designed EndoText, a supportive text message program for individuals with endometriosis. Initial evaluation of the text messages by consumer representatives and health professionals suggests high acceptability and suitability of the developed text messages. Future studies should further evaluate the acceptability and effectiveness of EndoText for a broader population of individuals with endometriosis.